On Mike Ending Treatment

On Mike Ending Treatment

This letter took me weeks of drafting, rewriting, waiting on changes from Mike, waiting on any kind of confirmation from appointments and scans… This is the most difficult thing I have ever written, and the thing I may be proudest of having gotten right. I am sharing it here because I think there is something very important to be gained when it comes to knowing how we are approaching death and grief, how we are communicating with the kids and our families, and how we are anticipating the end of Mike’s life. Some names are redacted for privacy.


Hello, friends, family, loved ones, well-wishers, our beloved community, all you incredible, wonderful people,

Last time I updated you, we were looking for an infection to explain Mike’s escalating symptoms. Unfortunately, we could find no evidence of one. Instead, Mike’s doctors moved up his next MRI to the Monday before Thanksgiving. What it showed wasn’t good. “Clinical progression,” the start of new tumors, escalation of his symptoms, and advancement of his disease. This made it likely the Avastin had stopped working. We were told to go home without chemo, enjoy our time with our family, try not to think about what the scans might mean. Spend time with the kids. If he got significantly worse over the next two weeks meant the Avastin had been keeping the disease at least somewhat in check, and we could start it up again.
And so we did, to the best of our ability. Mike’s symptoms continued to increase, but not at a pace that indicated Avastin had been making a difference. And so we checked in two weeks later to see if we should restart chemo… but things looked no less clear. We decided to wait another two weeks, to look for a significant drop in his health.

We spent those two weeks diligently watching for any change in any area of Mike’s health. Anything that could give a clue as to his status. Anything that could tell us what was happening inside Mike’s brain. And although Mike’s health continued to decline, the pace remained slow and steady.

Last week we conferred with the oncology team again. With the hospital social worker. With his rehab team. With our therapists. With palliative care. And we crafted a plan to transfer Mike to hospice care. The facts were clear—Mike is no longer a candidate for chemotherapy. We are out of options for treatment. But we had no idea how long he might be in hospice, if it made sense to continue with physical therapy, and some of his medications at least. (Do not get me started on insurance, because they way they cover hospice care precludes all kinds of other things, and there is no purpose to it but basest cruelty.) So in hopes of understanding the pace of the progression of the disease, Mike’s oncology team sent him in for an additional MRI yesterday.

Aside from having the worst MRI experience in almost fourteen years of near CONSTANT images (including a broken car grab handle, facial lacerations, and several hours in the ER), we got what we were looking for. Yes, the scans show that in one month the tumors grew, not as rapidly as we expected, but still by about 50%. But in addition to growing again, Mike’s glioblastoma is doing what glioblastoma does, throwing clots. Mike has, over the last month, suffered three acute strokes on the healthier side of his brain. These account for his worse days, his weakness and disorientation, his increased fatigue. I have suspected several times over the last weeks he is also throwing small clots in his chest, though these are being caught by his IVC filter.

He is already being treated for clotting as much as is humanly possible. With nothing more we can do to fight tumors and nothing more to fight the symptoms they cause, we are starting hospice on Christmas Eve, giving ourselves the gift of experiencing Mike’s last days in comfort, peace, and joy.

Without further treatment what we have left, in unknown quantities, is time. In order to make the most of this last resource we have spoken with our parents, the kids, and their school, and are prioritizing our time together. Video games, board games, puzzles, making happy memories. Taking lots of pictures.

After Mike’s first brain surgery I wrote to nearly everyone on my contact list with news he had been diagnosed with glioblastoma. Upon re-reading that email, there are two passages that stand out to me. The first is, “The doctors say that the likelihood of surviving this for 10-20 years is extremely slim. But with aggressive treatment and a positive attitude, who knows what might be accomplished?” The other is, “Wedding plans are not going on hold. We both hope that all of you will be able to join us when we get married this spring.” His attitude for the last thirteen-and-a-half years has been beyond positive. His approach to treatment has been more than aggressive. He remains selfless and brave beyond reckoning. We were married that spring, and have been blissfully happy.

Yesterday an ER doctor told us about Mike’s strokes, which feels fitting. It was in the ER that we first learned about the tumors, a day after we became engaged. When we told the ER doctor that Mike had lived for more than thirteen years with his diagnosis, at first he didn’t believe us. He told us that became an ER doc, he was a neurosurgeon specializing in removing glioblastoma tumors to send off for research. He had never heard of anyone living with Mike’s diagnosis so long. We assured him these have been the best thirteen years, that we have no regrets, and that we know what we’re facing. The doctor cried and ordered in dinner for us. Said he would never forget us. And we told him that with Mike starting hospice next week, it was okay to discharge him home to be with the kids.

Mike and I have lived with the knowledge that the end would come for thirteen-plus years, and long ago made peace with the fact of it. As we told the children, glioblastoma is like a roller coaster. A big drop is coming, and we can tense up with fear, but that won’t stop the ride from ending or end it sooner. All it might do is make our last time together harder. Instead, we can take a breath, enjoy the thrill, and feel for a moment like we’re flying. That won’t make things last any longer either, but we’ll have enjoyed every moment that we can. And while our lives have been the best ride, the most fun and the most joyful, glioblastoma has not. Mike has suffered three embolisms, three deep vein thromboses, five brain surgeries, two full courses of radiation, two medical trials, three years on Optune, a lung infarction, an antibiotic-resistant E Coli infection, four chemotherapies, and now five strokes, not to mention the host of side effects from all the above. He is ready for this ride to end.

A few days after the email in which I shared Mike’s diagnosis, I sent another. It included the remark, “It’s truly incredible how much love has been thrust upon us this past week.” For 702 weeks, you have never let up. We are outrageously spoiled with your love. Mike and I have felt, not every day but nearly, that we are the luckiest people on Earth.

I expect you want to know if we’re okay. The simple answer is no, of course we are not okay. There have been many tears shed, many sleepless nights, many difficult conversations. Some moments are terrible. But the simple answer is also, yes, we are okay. We are unbelievably supported. And we are here for each other in ways we’re only beginning to understand. Some moments are great.

We are so grateful that it’s Mike’s parents who are here with us now. We are so grateful to my parents, and my sister and brother-in-law, and the friends who despite the pandemic have sacrificed tremendously to be able to be physically present to help us over the last few months of Mike’s treatment. We are so grateful to the friends who came to visit us during the summer. We are so grateful to the friends who pooled resources to give me a day “off” a month ago, which has been so instrumental in keeping me sane through this time. We are so grateful to everyone in our lives who have been with us, from a distance, sending cards and food and flowers and an endless supply of hope. But all good things, and thankfully terrible things, too, must come to an end.

Please don’t call Mike. We are prioritizing our time as a family above all. He may be up to calls in the coming days or weeks, but he isn’t now. While Mike loves you, there are only so many hours in the day that he can be up and about and making memories with the girls. And we do not know how many days there are before that too must stop.

Over the last several months I have withdrawn from our friends. Answering questions like, “How is Mike?” has been too painful. But with everything out in the open, I would relish company after the kids and Mike are in bed. Send me a message. Organize a group zoom. Invite me for a Skype drink. Plan a viewing party for Bojack Horseman or something. Please invite me, even if I say ’no’ a lot. I certainly won’t be up for it every day, but I would love to try and spend time with you. I need your company now, or at least I need the knowledge that you are there to sit with me in my feelings or outside of them, to share love and sorrow.

I’d like to leave you with a few resources. The first is an article about Ring Theory, which I ask you to familiarize yourself with before reaching out to express your grief or support to me, Mike’s parents, my parents, the kids, or our siblings.

The second is an article about anticipatory grief, which I hope helps you process this information in the coming weeks.

The last is an article about how children process loss, and how to talk to them. Although adults often don’t know how to have these conversations, it’s not the girls’ responsibility to tell us what they need us to ask.

Yes, there will be a care calendar going up, but not yet. Our friend Kris has started a gofundme to help cover Mike’s out-of-pocket medical expenses (DO NOT GET ME STARTED ON THE AMERICAN INSURANCE SYSTEM I COULD SCREAM ALL DAY) which may include a full-time caregiver joining us in the house, or physical therapy, or a van rental, or a better mattress and assorted supplies. There is much uncertainty hanging over us in this department now.

Mike and I have taken time over the last few weeks to assemble a playlist of songs that have helped both of us embrace our life knowing the inevitable would always come. This music helped keep us from dwelling on fear, often enabling us to spend the last 4,918 days together doing what we plan to do for however many lie ahead—relishing our love and filling our hearts with joy. Consider it an extended Part II to our wedding CDs.

You may not hear from me much in the coming days. Or you may hear from me constantly. I don’t know what I’ll feel is right, or necessary. But do know that whether or not I am present online or in email, when there is news, you’ll know.

With unending gratitude, the unbearable wish to hug all of you close to us both metaphorically and in-person, and with so much love,
Lea


 

You can donate to a GoFundMe for Mike’s end-of-life care here: Love for the Grover Family

 


 

You can read more about coming to terms with the end of Mike’s life here: When All You Have Is Time

Read my most recent post here: The Grover Annual Holiday Letter

If you’re social, follow me on TwitterFacebook, and Instagram!

Type your email address in the box and click the “create subscription” button. My list is spam-free, and you can opt out at any time.

Leave a comment